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Overview
Background and Purpose
• On Pins & Needles: Caregivers of
Adults with Mental Illness
• Community Inclusion From the
Perspective of Caregivers of People
with Psychiatric Disabilities
The big picture
• 8.4 million Americans care for an adult with an emotional or
mental health issue*
• Caregivers have typically provided care for 8.7 years, while
caregivers of an adult care for 4 years on average (any
condition).
• Most care recipients (58%) are between 18-39 years; most
caregivers (45%) are parents caring for an adult child, though
other relationships can be impacted
• Main conditions requiring care: bipolar disorder (25%),
schizophrenia (25%), depression (22%), and anxiety (11%)
* from Caregiving in the U.S. 2015, National Alliance for Caregiving and AARP Public Policy Institute
On Pins & Needles:
Caregivers of Adults with
Mental IllnessGail Hunt
National Alliance for Caregiving
President & CEO
Sita Diehl
NAMI
Director of Policy & State
Outreach
Partners
• National Alliance for Caregiving• Non-profit coalition of over 50 national organizations
• Established in 1996 to support family caregivers and the professionals who work with them
• www.caregiving.org/
• National Alliance on Mental Illness (NAMI)
• Mental Health America (MHA)
Advisory committee
• Richard C. Baron, MA, Director of Knowledge Translation Activities,
Temple University
• Sita Diehl, MA, MSSW, Director of State Policy and Advocacy, National
Alliance on Mental Illness
• Tamar Heller, Ph.D., University of Illinois at Chicago
• Karen Hirschman, Ph.D., University of Pennsylvania
• Carol Levine, Director of Families and Health Care Project, United
Hospital Fund
• Victor Molinari, Ph.D., University of South Florida
• Debbie Plotnick, MSS, MLSP, Vice President for Mental Health and
Systems Advocacy, Mental Health America
• Rosalyn Roker, MBA, MA, University of South Florida
• Donna Wagner, Ph.D., New Mexico State University
• Kelly Niles-Yokum, MPA, Ph.D., University of La Verne
Methodology
• Quantitative online interviews with 1,601 caregivers ages 18
or older, currently providing care or cared in the year prior
• Targeted, non-probability-based design provides an in-depth
look at a pre-identified population
• Findings may underestimate challenges as respondents
were typically more educated and wealthier than the general
public
Who are the caregivers?
• Most caregivers in sample were female (80%)
• They usually are caring for a relative (88%)
• Nearly half are caring for an adult son or daughter
• Most are between the ages of 45 and 64 (average age is 54.3
years old)
• 65% had a college education or more advanced degree
• 46% had a household income of $75,000 or more
• 24% lived in rural areas
Who are they caring for?
• Average age: 46.3 years old. Most are under age 40
• Almost half live in same household as caregiver (45%) or
within 20 miles (27%)
• Three in ten have an alcohol or substance abuse issue
• Almost half are financially dependent on family and friends
Care Recipients
• Gender:
• 51% male
• 49% female
• Diagnoses:
• 25% bipolar disorder
• 25% schizophrenia
• 22% depression
• 11% anxiety
• 28% substance abuse issue
• 32% had at least 1 arrest (45% males, 19% females)
• 21% homeless 1 month or longer (25% males, 16% females)
Duration of caregiving
Q14. How long have you been providing/did you provide care to your
[relation]?
8%
20%
19%
17%
33%
4%
Less than 6 months
6 months to 1 year
1 to 4 years
5 to 9 years
10 years or more
Not sure
(n=1,601)
One-third of caregivers have cared for 10 years or more
Care Recipient Age
• Q13. How old is/was your [relation]?
37%
21%
21%
20%
18 to 34
35 to 39
40 to 64
65 or older
(n=1,601)
A majority of people receiving care were between 18-39 years old
Challenges: Time to Diagnosis
• Q22. [If Accurate]: How many years did your [relation] display symptoms of an
emotional or mental health issue before you felt he/she was accurately diagnosed?
• [If Not Accurate]: How many years has/did your [relation] been trying/try to get an
accurate diagnosis for his/her emotional or mental health issues?
23%
13%
18%
13%
7%
11%
14%
16%
10%
13%
11%
8%
14%
29%
Less than one year
1 to 3 years
4 to 6 years
7 to 10 years
11 to 15 years
16 years or more
Not sure
Accurate diagnosis (n=1,018)
Not accurate (n=583)
Example: Time to Diagnosis
“He developed schizophrenia in his early teens.
It took years for anyone to make the correct diagnosis,
despite the fact that I paid out of pocket for multiple
evaluations.
We were only fortunate enough to get help when I
asked a friend, a psychiatrist, to find someone for my
son. We were referred to a resident who was wonderful
and helped us to deal with the diagnosis. She is now in
private practice and still sees my son at a reduced rate.”
Challenges:
Medication Management
How difficult is/was it to…
• Q24a. find a specific drug and dosage that you feel works/felt worked for
your [relation]’s mental health issue(s)?
• Q24b. get your [relation] to take his/her medication as prescribed (the
right amount at the right time)?
33%
10%
18%
8%
18%
23%
11%
23%
19%
31%
1 - Not at all difficult 2 3 4 5 - Very difficult
54% Difficult to find drug and dose
Caregivers whose recipient takes
prescription medication
(n=1,338)
30% Difficult compliance
To find right drug and dose
To get care recipient to
take drug properly
Example:
Medication Challenges
“Right now my son finally has the right "cocktail". It took
us almost four years and three suicide attempts before
getting to this point. Accessing his medication is now
easy, but not so for many years!”
“My son happens to have a very good psychiatrist at the
moment who has convinced him that medication will
keep him functional. It has made a huge difference in
our lives. The doctor gives him therapy which has been
unusual. It has given my son a new lease on life.”
Challenges:
Caregivers often feel excluded
Q33. To what extent do/did you feel care providers have/had included
you in conversations about your [relation]’s care?
16%
39%
37%
1%
6%
(n=1,601)
Not included at all
Included by some, but not all
Included when needed
Included more than should have been
Not included but did not need to be
55% Not included
Challenges: Care recipients often
discharged “too early” or “too quickly”
Q38. Of all the times your [relation] went to an emergency room,
hospital, or other facility due to an urgent mental health issue, do you
feel he/she was ever sent home too early or too quickly?
No24%
Yes70%
Not sure7%
Caregivers whose recipient
had crisis visit (n=1,256)
Challenges:
The ‘business of care’
Q41. How time consuming is/was it for you to help your [relation] with
his/her care paperwork or finances?
Q43. How financially dependent is/was your [relation] on his/her family
or friends?
5% 15% 34% 24% 20%
1 - Not at all time consuming 2 3 4 5 - Very time consuming
44% Time consuming
Those who manage recipient’s finances
(n=1,361)
14% 12% 22% 21% 28%
1 - Not at all dependent 2 3 4 5 - Completely dependent
49% Dependent
(n=1,601)
Examples: Business of care
“I would love to be able to spend time with my relative just
visiting, socializing, and enjoying his company. Instead, we
spend our time trying to get him into programs, doing
paperwork, and generally trying to navigate the system,
mostly with little success.”
“Service providers expect the caregiver to complete a large
bundle of forms which one tries to do after work, in
between fixing dinner, cleaning house, doing laundry - and
sleep! The paperwork burden is complex and daunting!”
Other challenges
• Arrest: About one in three report their loved one has
been arrested (32%)
• Homelessness: One in five caregivers report their loved
one has been homeless for a month or longer (21%)
• Self-Harm and Suicide: Two-thirds of mental health
caregivers are concerned their loved one will self-harm
(68%) or die by suicide (65%)
What social services would help
with providing care?
Q34. Select any care or support services you feel your [relation] needs/needed.
Q35. Which have been/were difficult to find in his/her area or community?
28%
34%
22%
22%
23%
3%
13%
9%
40%
24%
37%
23%
13%
29%
15%
11%
69%
59%
59%
45%
36%
32%
27%
20%
Needed but difficult to find Needed but not sure of availability Needed, not difficult to find Total needed
(n=1,601)
Mental health professional
Peer support
Medical provider who understands mental health
Case manager
Day programs/treatment
Pharmacy with needed medications
In-patient mental health facility or hospital
Treatment program for substance abuse
Examples:
Needed social services
“We need services within my county. We have to travel
80+ miles round trip for a psychiatrist visit of 5 minutes!”
“There should be a mentor-type person available for my
son on a regular basis so I'm not the person who must
always be “on-call" 24/7; someone to teach him how to
cook, balance a checkbook and clean his apartment.”
Other findings
• Many caregivers express concern for the future, yet only half
have made plans for their loved one’s care
• 1 in 3 caregivers has guardianship or power of attorney.
40% would like more information.
• 74% report that caregiving has been stressful
• 33% report their health as excellent or very good versus 27%
who report it as fair or poor
• Yet, majority indicate that they feel closer to their relative
(59%) and he/she appreciates the care they provide (55%)
What policy solutions would best
help family caregivers?
Q52. Which of the following policies or programs would be/have been most
helpful to you as a caregiver?
31%
30%
15%
13%
10%
(n=1,601)
Mental health servicecoverage parity
Care navigator
Education for you (caregiver)
Training for law enforcement or first responders
None of the above
Public Policy Solutions
• Provide assistance for both caregivers and care recipients in
navigating the mental health system. County and state providers
can help.
• Include caregivers as part of the health care team.
• Educate and provide resources for caregivers of adults with
mental illness, especially around issues of stress and caregiver
health.
• Educate about HIPAA: Develop and disseminate model training
for providers, lawyers, care recipients and families on appropriate
communication of health information to support people living with
mental illness.
Solution: National Mental Health Family
Caregiver Support Program
• National Mental Health Caregiver Technical
Assistance Center:
• Training, curricula and technical assistance
• Grants to states for organizations serving family
caregivers of adults with mental illness to provide:
• Information on mental health services, supports and
coverage;
• Navigation and assistance to access services & supports;
• Education and support groups for family caregivers.
Solution: CARE Act
AARP model state legislation
Care, Advise, Record, Enable (CARE)
• Family caregiver name requested upon admission to
hospital or rehab
• The family caregiver notified if relation is to be discharged
• The hospital or rehabilitation facility must provide an
explanation and live instruction of caregiver tasks
Now enacted in 34 states
Caregiver Resources
• National Family Caregiver Support Program
• Life Span Respite Program
• VA Caregiver Program
• Aging & Disability Resource Centers
• Local Caregiver Coalitions
On Pins & Needles: Caregivers of
Adults with Mental Illness
Report available at:
www.caregiving.org/mentalhealth
Challenges and Solutions
for Mental Health CaregiversRichard Baron, MA, Temple Collaborative for
Community Inclusion of Individuals with
Psychiatric Disabilities (TU Collaborative)
Debbie Plotnick, MSS, MLSP, Mental Health
America (MHA)
Why ask caregivers about
community inclusion
Among the eight policy recommendations in the Pins and
Needles study is one that explicitly refers to community
inclusion and a number of its domains:
Provide access to a full array of high-quality behavioral and
mental health services across the continuum of care, as
well as access to community inclusion, vocational,
educational, and peer supports.
What is Community Inclusion
• Housing
• Employment
• Friendships and Intimate Relationships
• Education
• Health and Wellness
• Spirituality and Religion
• Recreation
• Civic Engagement
Summer 2016 Caregiver Survey
More than 450 respondents answered 10
questions and provide 1000’s of comments
• Parents (largest number)
• Adults caring for a parent
• Adults caring for a sibling
• Adults caring for a spouse
• Mental Health Professionals
• People reporting their own lived experience
Far More Challenges than Solutions
Uninvo lved
Minima lly
Invo lved Invo lved
Very
Invo lved
Compe titive Emp loyment 62% 18% 11% 8%
Recrea tiona l Activ ities 42% 41% 13% 4%
Re lig ion o f Cho ice 52% 25% 15% 8%
Friendships Unre la ted to Se rv ices 28% 45% 21% 6%
Community Events 49% 39% 8% 3%
Housing o f Cho ice 45% 22% 21% 12%
Educa tiona l Supports and Opportunities 48% 29% 15% 8%
Hea lth and We llness 26% 44% 22% 9%
Family Supports 13% 33% 29% 25%
Hea lthy, Meaning ful Intima te Re la tionships 45% 31% 17% 8%
Overa ll (Answer to Q1) 18% 36% 26% 20%
Challenges by Domain: Housing
• Residing with caregiver on-going
challenges:
• “My adult son 47, has always lived with us, his
parents. He is quite isolated… We are in our early
70’s and worry about housing for him in that his only
sibling lives [abroad].”
Challenges by Domain: Housing
• Living independently often put people
between the proverbial rock and hard-
place:
• “ Sometimes the only choices are within a
segregated mental health setting or an unsafe
community setting.”
Challenges by Domain: Employment
• Even though research shows that employment is
one of keys to recovery, Caregivers described
their loved ones
• “lacking skills training,” “not having a high school
diploma or GED,” and as having “no job training
or experience.”
• Also cited: uneven job history, and criminal
records, as well as job application process as
impediments.
Challenges by Domain: Employment
• Other caregiver reported challenges
• Jobs without “growth potential.”
• Disclosure being a “double-edged sword.”
• Number one reason caregivers gave for their
loved ones’ lack of involvement in competitive
employment were attributed to the illness. • Symptoms, medication side effects, difficulties
finding or keeping a job, “coworker discomfort,”
and conversely that the “person feels
uncomfortable around co-workers
Challenges by Domain : Friendships and Intimate
Relationships
• Caregivers attributed challenges to their loved
ones’ behaviors and perceived appearance:
• “My son finds it impossible to make friends. Often his
behavior is "odd" and it put a strain on his social
skills.”
• “…He has never had an intimate relationship. Few
women can tolerate his "weirdness."
Challenges by Domain: Education
• Caregiver's own words;
• “Asking for supports to be put in place during high school was
not supported by school staff because her IQ and test scores
were "too high" yet she clearly needed additional support in
some subjects, and with managing her mental illness.”
• “My child was bullied at school, not so much by other children --
but by staff and teachers. She has been victim to some dreadful
verbal abuse by teachers.”
Challenges by Domain: Health and
Wellness/Recreation
Caregivers cite illness, lack of money, lack of
interest: • “"…hard to focus on physical wellness when so much
energy needs to go into the management of the
mental illness.”
• “Participating in health and wellness beyond doing
home exercise also requires interaction with others.”
• “There are many wellness activities/groups and
programs that are simply unaffordable and out of
reach to her.”
Challenges by Domain: Religion of Choice
• While participating in religious life is reported to be very
important and has positive effects for recovery,
caregivers and consumers didn’t always find welcoming
environments:• “We have attended Church and heard from pastors that there is
no such thing as mental illness, and people should not be taking
pills and expecting to get better, they just need a better
relationship with the Lord; (explain that to your mentally ill young
person).”
• “The church thinks if I had more faith I'd be "healed".”
Barriers cited by Caregivers
• Transportation/Location: “X can’t drive,” or “we need transportation.”
“We are in a rural area.”
• Financial: Any combination of income, financial difficulties, can’t afford
• Access to Services: these included any kind of clinical and support
services (including peers and support groups, case management).
• Stigma or Discrimination: This included direct references to stigma and
discrimination as well as impactful actions “she got fired because of her
bipolar” or “the school would not honor her IEP”
• Physical Issues: co-morbidities, age, being physically in prison or jail, and,
in a lot of cases… pain.
Caregivers reported being impacted
Not Impacted
Minimally
Impacted Impacted
Highly
Impacted
Recreation 10% 27% 37% 27%
Religious Activities 44% 26% 16% 14%
Employment 23% 26% 27% 24%
Friendships 15% 26% 30% 29%
Family/Community Gatherings
Ostracized 34% 24% 23% 19%
Overall 3% 20% 36% 42%
Impact on Caregivers
“ She's fine … I have no socialization!”
“…It exhausts me and burns me out as it is
now. I'm out of work because of the stress of
this situation.”
Caregiver recommendations
• Don’t give up be educated:
• Get loved ones out of the house and into the community when
possible.
• Keep looking for opportunities and don't give up.
• Continue to offer to take loved ones to events and encourage
other friends and family to do the same.
• Become informed of support services available in the community
for both the person needing help and for caregivers
More Caregiver Recommendations
A caregiver walks a fine line between
support and encouragement. If you
push too much it just sets back the trust
you have worked for.
STAY CONNECTED. Make sure you are
reaching out often and continuously.
Show your love and willingness to listen,
always.
Caregivers Policy Recommendations
• People to fully participate as community members.
• Services that engaging, holistic, address trauma, and
that don’t end when crises abate
• Services that go beyond clinical improvement
• Education for employers and coworkers, and educators
so people can stay in school and be employed.
• Understanding about difficult symptoms and the
attendant side effects of medication
More Caregiver Policy Recommendations
• Compassion from teachers and other school personnel, clergy, and
the public.
• Support for caregivers (such as respite for people caring for adults,
not just kids).
• Education to better help their loved ones be more involved in life,
including information about what community resources exist for
recreation, health and engagement.
• Policy makers and legislators to address issues related to poverty;
lack of transportation; community services that are ineffective,
scarce, or hard to access; and the unavailability of housing, and
unsafe housing.
• More people to step forth as “exemplars,” demonstrating recovery
and showing that “people with mental illnesses are not scary.”
For More Information
• Please contact: • Debbie Plotnick at Mental Health America,
• Rick Baron at the Temple Collaborative:
• To download the complete report: visit: http://www.mentalhealthamerica.net/sites/default/files/Commun
ity%20Inclusion%20from%20the%20Perspective%20of%20Care
givers%20FINAL.pdf
Or Click here
